Wednesday, August 29, 2012

Sophie loves watching Cicily get on the bus every morning to go to school. She talks about Cis being in Kindergarten and how she wants to go to school too. The week after Cicily started Kindergarten, Sophie and I were driving and saw a little bus like Cis rides. Soph got all excited and said, "there's Cissy Mom, there's Cis. Let's go see her." I told her that it wasn't actually Cicily's bus, Cis was already in her class at school. "Let's go see Cissy in her class Mommy," she replied. I told her we'd get to see her when she got home from school in a few hours.

Then Sophie got pouty and said, "But I just miss her so much."

It was very sweet to me. I'm very glad that Sophie loves her Cicily enough to miss her so much. It also broke my heart because it made me wonder what I'll tell her on the days in the future when Cicily won't be coming home?

Thursday, August 23, 2012

Cicily was very excited about her first day of school this year. She is in a special education self-contained classroom with 5 other kids grades K-3. All the other kids are very similar to Cis - limited body control, but able to learn on grade level. For example: today they worked on subtraction and her teacher put some objects on the tray of her wheelchair and counted them out with her, then she took some away and Cicily had to push the number button on her communication device that corresponded to the number of items her teacher took away and then how many were left. Her teacher is amazing. Cicily's already in love and I'm thinking about finding some teacher award to nominate her for!
Cicily also gets to do P.E., library (a fave), music, and go to a general education Kindergarten class for calendar time. She rides the bus and gets to be at school for 4 1/2 hours. So far Cicily has enjoyed making the boys in her class laugh by putting her feet up on the table, wearing purple since it's her and her teacher's favorite color, choosing a prize for working hard each day of school so far, and lots of other great new things. She's so proud to be learning new things. Her nurse Tami or her teacher let me know each day what she's worked on and when I talk to her about something new she's learned, she just beams! I'm so glad she has the opportunity to use her brain in a way that it works- to learn and to interact with new friends. I hope the year continues to be as great as the first few weeks have been!

In front of her new school. She's not wanting to look at me lately when I take pictures. What an independent little 5 year old - grrr!

Friday, August 17, 2012

Cicily got to go to Camp Zoo for 2 days this summer. This camp was great! Cicily loved being up close with all the animals of course, but she also loved the staff - they were so cool with her. We always love kind-hearted people.

Cis got to watch me feed a giraffe (she chickened out -odd). And she pet stingrays, rabbits, snakes, lizards, and even an elephant's foot!

Cicily got to go back to Camp Wiggles and Giggles this year. She loved music time! She's always requesting Bob Marley's Three Little Birds (Every little thing's gonna be alright) now and got Sophie singing it. It seems very appropriate and it's so cute when Soph sings and Cis beams.

Lots of fun days playing with Michelle! One day Michelle took Cis to the firestation where her husband works and got this cute picture!

More camp - ball pit

SEDONA

We went to Sedona for a few days of rest and family time.

Ghost town of Jerome. Girls are on an old mining train.

The cool resort we stayed at had a mini-golf course. And, the girls' favorite - a hot tub out on the patio of our room.

Of course we saw some archaeology on the trip. This is going up to some rock art at Palatki. Cis was enjoying the rugged ride. We stayed and waited out some rain in this canyon area and were rewarded with some awesome flash flood waterfalls on the red rocks!

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.